Paratriathlete Allysa Seely on prosthetics and PRs

Allysa Seely shares her battles with a rare brain abnormality, neurological issues and amputation as part of ESPN The Magazine's 2016 Body Issue.

This is an online exclusive story from ESPN The Magazine's Body Issue 2016. Subscribe today! And for more from the 2016 Body Issue, check out espn.com/bodyissue, and pick up a copy on newsstands starting July 8.

Allysa Seely, the 2015 paratriathlete world champion, will be heading to Rio for the 2016 Paralympics in September. She sat down with Body Issue reporter Morty Ain to discuss her training, her love/hate relationship with her prosthetics and the many, many lessons she's learned along the way. Here's Allysa, in her own words:


People of all different abilities can compete at the highest level of sport. You don't need to have two legs or two arms. I want to help promote that.

I think there's still a big stigma around disability, especially disabled sports. A lot of times people confuse the Paralympics with the Special Olympics. You just don't sign up to go to the Paralympics. You have to qualify just like Olympians do, and it takes years of training and hard work to get to that level. I still think there's some education that needs to be done around it. Eight out of 10 times, people not involved in sports will make that mistake. The Special Olympics is a great organization, but it's a participatory organization for individuals with developmental disabilities.

I train seven days a week. I train two to three times a day and lift in the gym three times a week. I swim almost every day and then bike and run four to five days a week. I'm training 15 to 35 hours a week. It's definitely a full-time job, because I don't want to be outworked.

As a society, I think we still view individuals with different abilities as being incapable. When people think of somebody in a wheelchair or somebody with a prosthetic they think of somebody who can't take care of themselves. We still see the disability before we see the individual.

People come up to me and say the craziest things. I had somebody come up and tell me that, if I had found God, "he would not have maimed you." Another time -- and this one still makes me laugh -- I was at the gas station and this lady behind me scoffed to her teenage children, "See, that's what happens when you eat crap and don't take care of yourself." I was kind of stunned. I turned around and she goes, "Diabetes, huh?" "Um, actually not." She's trying to lecture her kids, who are a little bit overweight, to apparently get them to have healthier eating habits. I was just like, "You realize your kids can only eat what you feed them, right? Let's get that straight. And second of all, just don't assume because I have one leg that I don't take care of myself and eat crap all the time."

Obviously, there are some great little kids who come up to me too. I had one the other day while I was running, and he just had the biggest eyes ever and he was like, "You are so fast! I want to be fast like you one day!" A lot of the times the kids get it; we're still working on the adults.

Joe Pugliese for ESPN

"As a society, I think we still view individuals with different abilities as being incapable. We still see the disability before we see the individual." -- Allysa Seely

ON PROVING EVERYONE WRONG
I was diagnosed [in 2010] with what is called Chiari II malformation, basilar invagination and Ehlers-Danlos syndrome. Basically, the Chiari malformation means my brain is herniated into my spinal column, so a significant amount of my cerebellum and brain stem is outside of my skull and inside my spinal column. The basilar invagination means the part that is from my skull to my spine is bent at a weird angle; it has like a kink in it. And Ehlers-Danlos syndrome is a connective tissue disorder. And then the complications from those three diagnoses and the surgeries I've had led to complications that eventually led to the amputation of my left leg below my knee.

I would like to say I was a fairly accomplished athlete before this all started. My personal record for 5K, which I'm very proud of, is 17:21. Then I started triathlon and was a nationally ranked athlete in age-group nationals. It kind of sounds cheesy, but when I first heard my diagnosis, I just wanted to get back to sports. It took over a year to get a correct diagnosis and to get on the path to treatment and surgery. I wasn't able to run anymore, I wasn't able to go out with friends. So when I finally got a diagnosis, I was relieved, but then my next thought was, "OK, great, what do I need to do to get back to triathlon?"

I was told I would be lucky if I walked unaided again. I was in the hospital and I was telling everybody that I had collegiate nationals in April -- this was in August -- and they were like, "Whoa, you've got to walk first." There was a significant amount of pushback and hesitation from my doctors, nurses and physical therapists. I would have to say I don't think anyone was on board. I remember the nurses and physical therapists were betting that if I ever walked again, they would do a triathlon. So I just set out to prove them wrong.

The word that I remember most prominently was "realistic." I think they thought they were trying to help me move on and accept what life was going to be like. I think it made sense to them at the time.

It definitely was a struggle. It was terrifying. I had gone through a year and a half of my life where I was seeing one doctor after another, being in and out of hospitals. I knew my body was rebelling and not able to do anything that I wanted it to. I was exhausted all the time. I was so relieved when I finally got a diagnosis and an option for treatment. But in rehab, I remember the feeling of nobody believing in me, and nobody standing there and saying, "All right, we're going to get there!" There were times I just wanted to break down and cry, but I didn't want to do it in front of them because I felt like I couldn't show any weakness, I couldn't show them that there was even a doubt in my mind that I wasn't going to be able to do this.

I had surgery in the beginning of August in 2010, and I competed in a triathlon in collegiate nationals in April of 2011. So just about eight months. By no means was it the fastest race in my life, but to this day crossing that finish line was probably one of the most rewarding experiences. I can still remember how it felt to accomplish something that nobody thought I could.

ONE FOOT IN FRONT OF THE OTHER
When your brain is affected, a lot of your body is affected too. There are a significant number of complications that have come with my condition. Obviously, the leg is the most difficult, but I have impairment in almost all of the muscles in my body. I lack something called proprioception -- that's where your brain is able to tell where your body is in space. So when you're walking without looking down, you know your left foot is in front or your right foot is in front. I don't have that in my legs at all. When I'm walking, and especially when I'm racing, you'll see me look down quite frequently to make sure that I know where my legs are. On the bike when I'm making turns, I have to look down to make sure that I know which foot is up so that I don't hit my pedal on the ground.

My condition has also led to epilepsy. There's a lot of autonomic nervous system issues, given that the part of my brain that is damaged controls all of my autonomic functions, so your blood pressure, your heart rate, your digestive system, your sweating ... I have a lot of issues with that kind of stuff as well.

The biggest challenge is the unpredictable nature of a neurological condition. For a lot of people, all they see is my amputation; they don't see the challenges in and out of every day. Last year alone, I was in the hospital for over a month throughout the year. Sometimes I have great days, and other days my body just doesn't want to cooperate. On a physical level that's obviously hard -- losing training time, losing fitness and all of that. But it's almost more difficult mentally: "This is what your competitors are doing, and you're stuck here and your brain isn't working." Every morning, I don't know what I'm going to get when I wake up, but I just have to figure out a way around it.

I think we still view individuals with different abilities as being incapable. We still see the disability before we see the individual.
Allysa Seely

MAKING ADJUSTMENTS, FINDING STRENGTH
I have to laugh whenever someone says athletes with prosthetics have an unfair advantage. Initially when I started racing, people would be like, "Great for you!" But as soon as I started to get faster and I started to win races, people's perspective on it changed. All of a sudden it went from "You're doing so great!" to "This is not fair. That gives you an unfair advantage." I have to say that while the prosthetic lets me do what I want to do, it's not the same as a foot. And it probably will never act 100 percent as a foot. All the research agrees that prosthetics are great, but they don't offer what an anatomically correct foot can to an athlete.

Any time the prosthetic doesn't fit it can be painful. Being an athlete, your body changes frequently -- you go up in weight, you go down in weight, you add muscle, you lose muscle, all depending on your training phases. The fit is very, very specific, so at dinner, eating a little too much salt can cause my limb to swell, and the next morning I can't get my leg on. Over time, as I've gotten more fit, my leg has gotten smaller, and we had to make new prosthetic legs. It's something you have to get used to, it changes. Obviously, at a race you want to be able to trust in it 100 percent, you want to know how it's going to react and respond, so when you have to change some of them it can become a little shaky. But at the same time prosthetics have come so far. I tell little kids who have never seen a prosthetic that I can do everything that I could do before, so that's something that I'm really grateful for.

Back when I was in that awkward adolescent phase, my list of what I would have changed about my body was a lot longer than what it is now. After all of the struggles I had been through, I realized how precious my body really was. I realized my body was doing things a lot of people didn't think were possible. It was coming through for me when nobody else was, and I think that's really when I learned to appreciate it and appreciate all the quirks and flaws. I think it took awhile to realize how everything I went through gave me strength. For a long time it felt like it really tore me down, but then when I got on the other side of the tunnel I have been able to draw on those experiences.

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